When I published my post earlier about the ways we keep our pain silent, one of the patient advocates I deeply admire responded to my post. And what she said reflects a truth I often hear in the office. It still hurt to hear.

Women of Teal ‏@womenoftealThere are those that think we are complaining because you can’t “see” pain and other side effects but still disabling 4 us.

When did our attitude shift so that telling the truth about painful experiences or pain itself is identified as complaining? How did the “positive attitude” become a mandate rather than a goal? Listen, I’m a psychologist. I am a brain science geek. I truly believe that finding and fully experiencing the moments of joy and comfort in our lives is important. I use gratitude journals and happy moments practice as therapy homework assignments. I am passionate about the possibility of people moving toward more brain and body health. I understand that sometimes we have to challenge ourselves to move and reach and risk–even in the face of pain.

But here’s the thing. While I believe that pain does not have to be the complete definition of our existence, I understand that pain is real. I understand that fatigue, depression, pain, and anxiety are not going to be banished by our will alone.

The expectation that people who are coping with chronic illness, of any stripe, should never talk about the hard parts of their life experience is just absurd. Chronic illness is a constant companion. If you are fortunate, your chronic illness may be well managed by lifestyle choices and medication. But even “well-managed” illnesses take a toll. So many of my clients are choosing between the progression of their illness or taking a medication that has significant negative side effects. And when you live with chronic illness, you can never be certain that you won’t have a “crash” day.

It does not support health to dismiss people’s experiences as “complaining.” It does not support health to diminish someone’s truth because it does not match your expectation of how things go. It does not support health to buy into healthy privilege and the assertion that health is a manifestation of virtue.

It is expectations like this, that people should suffer in silence in order to deserve our support, that further the many layers of stigma surrounding physical and mental illness.

So let’s talk about how we can create moments–in health care and in society–where we truly listen to the experiences people are having. When we trust that they are describing the truth of their experience. And where we choose to offer compassion instead of judgment.

There is a wonderful online movement based on the work of Christine Miserandino of the ButYouDon’tLookSick Foundation. In an effort to explain the challenge of living with fibromyalgia, she wrote an essay that she called “The Spoon Theory.” Essentially, the theory suggests that we each have a finite number of emotional & energetic “spoons” to get through our day. Some days, it takes every single spoon we’ve got to get out of bed. Other days we have to ration our spoons to participate in something important.

The reality behind the spoon theory, and the #spoonie movement that has grown out of it, is that a majority of the most painful and debilitating illnesses that we face (Crohn’s, lupus, depression, diabetes, cancer, MS, anxiety, & RA–just to name a few) don’t have any visible signs. With the right makeup, clothes, and effort, a person with intense physical & emotional pain can sometimes look “just fine.” Looking just fine doesn’t mean that we feel just fine. In fact, that “just fine” face may hide a world of pain and suffering.

Since we live in a society where we are supposed to ignore our pain, many of us have bought into the story that we should feel fine. That our pain is a sign of our weakness. That if we were strong enough, courageous enough, hard-working enough, virtuous enough, we would be able to do all the things that a healthy person can do, in the same time that a healthy person could do it. In short, we have bought into the story that maybe our invisible pain isn’t real pain. We begin to feel that maybe our invisible pain is “just in our heads” or a sign of our failure.

This makes me so angry. Unless you have a broken bone with a cast, a wheelchair or another dramatic physical marker like hair loss, most illnesses don’t have a visible indicator. There isn’t a pain rating scale flashing above your head. Fatigue and depression don’t show on your face. Almost all pain and suffering is invisible. AND it is real.

People who are struggling to get through a “normal” day because of pain or other invisible health issues do not need to have their struggle questioned or discounted. That kind of behavior is healthy privilege in action. So, let me state this clearly.

Invisible suffering is real suffering.

Instead of questioning the validity of people’s pain, let’s work on creating support systems that help them move through pain in healthy ways.

As I wrote yesterday’s post, about the fact that health is not a virtue, I realized that I am pretty fired up about the stigma and shaming that many of my clients (and so many of the folks that I have met in various health communities) are facing. It is a real, daily, painful struggle. And this shaming of our experiences means that we are not honest with ourselves.

I have lost count of the number of times that I have had someone tell me that they truly believe their illness–or their pain, or their anxiety–is a result of their own personal weakness. Worse than that, we have received this message–that our pain is weakness–from people who we should be able to trust for support. We’ve heard it from health care providers. We’ve heard it from family members. We’ve heard it from friends or supervisors. And maybe most painfully, we have heard it from ourselves.

I’m guessing you have been in this struggle too. Maybe you aren’t facing depression, or heart disease. Maybe you aren’t dealing with diabetes or anxiety. Maybe you are one of the lucky ones whose physical and mental health are pretty solid. Even if you are, I think you can relate. Think about the last time you were sick–the flu, a nasty cold, a seasonal bug. Did you really let yourself get the full amount of rest and recovery that you needed? Did you head to bed and stay there until your body was on the way to health again? Or did you push yourself–back to work, to household chores, to family responsibilities? If you did push yourself (which is the most common answer), take a moment to ask yourself why that is. For some of us, the answer is that we have limited sick time, or limited support–and we feel that other responsibilities beat our own recovery. For others, it is that we want to “tough it out.” We want to prove that we can be tougher than the germs.

And I think that we want to be tougher than the germs because we believe that we will be judged for taking the time to recover properly. We have drunk the Kool-Aid, and we believe on some level that health is a virtue–even though it is not. But if we follow that logic, and health is a virtue, than our illness, whether it’s a summer cold or cancer, must be blameworthy.

So imagine the relentless silencing that folks with chronic illness face. The pressure to “show healthy” is intense. Maybe we need to think about the possibility that the shaming and blame stories about our pain are contributing to our pain. Maybe it is time to break the silence. Maybe, if pain or depression or fatigue prevent us from participating in our daily life, we can practice saying that–to ourselves at first, and then to others.

I invite you to start by sharing your pain story with me here in the comments. Please let me know if you need additional support.

This post was originally shared on the #MedPsych blog, but is cross-posted here for my practice readers.

Ten days ago, I had the privilege of joining the participants at Standford’s 2014 Medicine X conference. I’ve written about this conference on my practice blog before, and it is a gathering with lofty aims. The conference was initially envisioned as a space to explore how health and emerging technology support one another. Over the three years it has been running, Medicine X has become the leader among healthcare conferences at integrating patient voices into the planning and narrative of the experience. This year, Medicine X invited some discussion of brain health related issues. One panel focused on the interaction between chronic illness and depression, and another focused on how brain health issues cut across diagnoses to be a “missing link” in whole person healthcare. I was thrilled to participate in both of these panels, and advocate for an issue that I believe is essential as we move into the future of healthcare.

Participating in these panels was a joy–I shared the stage with some courageous advocates whose stories are very powerful. However, my participation also reminded me of a critical topic.

Stigma is the elephant in the room when we are talking about integrating brain health more fully into healthcare.

I have written a bit about healthy privilege and the stigma of illness, so I won’t repeat that here. There is also a great deal of powerful writing about the more obvious ways that brain health issues are stigmatized. One of my favorite reminders of this is a pointed cartoon:

This cartoon cuts to the heart of the most obvious brain health stigma–which seems to be founded on the idea that brain health can be improved just by “adjusting your attitude” or “trying harder.” That piece of stigma is very real. So is the piece of stigma that has cost individuals facing brain health challenges their jobs or their relationships.

However, what I saw at Medicine X this year was a more challenging and subtle component of stigma. I saw an assumption that brain health issues are something that patients deal with, not a challenge that confronts health care professionals. People were willing to talk about providers who were burned out. They were much less willing to talk about providers who might be facing depression, anxiety, unsustainable stress levels, etc. That language still seemed taboo. And that’s a problem. As long as brain health challenges are something that “they” experience, stigma will continue. As long as it is not acceptable for a medical student to own that the intense demands of their training are difficult emotionally as well as practically, stigma will continue.

I also saw brain health discussed as something “other.” Medical students talked about not knowing how to approach a referral for brain health services without upsetting their patients. Until a referral for a brain health consultation is as automatic as a referral to an endocrinologist, stigma is still at play. Until we are trained to think about the brain and our social functioning as a vital component of health that we wouldn’t dream of ignoring, stigma will still be an issue.

I don’t want this post to be construed as pessimistic. At Medicine X, I heard medical students ask questions that showed they truly want to be part of this conversation. I saw patients who discussed their depression as a medical challenge on the same stage with diabetes or autoimmune disorders. I saw that there is so much hope and potential for the future.

I also saw that we have work to do. Let’s keep the conversation going. Shining a light is how we challenge the grip of stigma.

Last year, I wrote a series of posts about the idea of healthy privilege and health stigma. My definitions of these concepts were based on the work of others before me, such as Peggy McIntosh and Kendall Clark. You are welcome to go back to the original posts and read them, but I’ll share the definitions again for you.

health stigma

The feelings of shame, isolation, self-blame and invisibility that many people facing physical or mental illness feel when others make assumptions or judgments about their ability, willpower, character, motivation, or work ethic (to name a few)–Ann Becker-Schutte’s personal & professional experiences

healthy privilege

1. A right, advantage, or immunity granted to or enjoyed by healthy persons beyond the common advantage of all others; an exemption in many particular cases from certain burdens or liabilities. b. A special advantage or benefit of healthy persons; explained by reference to divine dispensations, natural advantages, gifts of fortune, genetic endowments, social relations, etc.2. A privileged position; the possession of an advantage healthy persons enjoy over persons with illness.3. The special right or immunity attaching to healthy persons as a social relation; prerogative.

In addition to the formal definition, I would add this:Healthy people enjoy the privilege of bodies that work in the ways that they expect, free from regular pain or suffering, without extraordinary effort. Healthy privilege allows healthy people to assume that their experience is “normal,” and to be unaware that coping strategies that work for them will not work for someone dealing with illness.

If you’re familiar with the definitions, thanks for your patience in rereading them. I’ve been thinking about this issue again this week. These concepts have been on my mind again because I’m hearing things from my clients, and in the communities where I participate, the remind me that health stigma and healthy privilege still alive and kicking.

I wrote about another aspect of this issue a few weeks back, when I talked about shame and patient blaming in healthcare. And just last night, during a discussion on Twitter, a patient shared this experience:

@MedImprovePro: Cancer still stigmatized. BRCA+, but told by co-worker nurse ‘you wished that on yourself’.

I was floored. Absolutely stunned. How on earth is it possible that we still have people, let alone healthcare providers–who should damn well know better, who believe that cancer is something that we can “wish upon ourselves.” And why on earth would anyone make that choice?

I should know better than this. I hear my clients tell me about the shaming and blaming they face both in and out of doctors’ offices on a regular basis. I hear about the blatant discrimination against folks with all kinds of diagnoses, both physical and brain-based. I know this is out there.

But I believe that we can do better than this. So, if you’re reading this post, I hope you share it. And I hope that, as you share it, you look at one step you can take to educate others about health, health stigma, & healthy privilege. Because it is going to require all of us taking action to build and generate change.